Head Go Boom Posts

…Unlike the first time around, this time my memory was pretty fragmented and scattered from that first episode until after surgery.

I believe I had one or two more “episodes” before my appointment for an angiogram. Though I suspect the angio was scheduled during that first ER visit. I went to the ER multiple times in the meantime. The “episodes” would start with my right sight weakening, followed by confusion, trouble speaking, and then a painful migraine-like cycle.  No strokes were found this time, but it was blatantly obvious something was clearly not right. It’s a long haul from home to Cornell, the parking is expensive, and we have a two and a half year old, so it was all incredibly inconvenient on top of all the scary fears and thoughts both Matt and I were trying to manage during this time.

It’s kind of amazing how little I remember about details, since I can tell you blow by blow, nearly every conversation had over the near month I was in the hospital the first time, and I had 4 strokes that time. Though I had a lot of TIAs and no strokes this time around, it’s almost like I was blackout drunk on and off for a month. My Neurosurgeon has since told me this is extremely common with trauma and hospital stays and many of his patients have experienced similar memory-voids.

I do remember the angiogram and the day after. If you’re unfamiliar with this particular procedure – a doctor basically inserts a camera/catheter into an artery in your groin, threads it up to your heart or brain, dye is injected through the catheter and an x-ray-like machine on the outside gets incredibly detailed images of everything inside (my personal non-medical definition, I’m sure google can provide a more accurate description).

I particularly hate this procedure because I’ve been partially awake for it. The first time I had a stroke on the table from crying hysterically with fear. I’m also allergic to the dye, and so I have to undergo a steroid/benedryl protocol before it’s done. This time was just slightly less nerve-wracking and stroke-inducing, though my low threshold for pain of any sort makes me recall the pain of the initial “poke” as particularly not fun. My Neurosurgeon, looking at my brain and saying “Oh no” (or something to that effect) and then telling me I had Moyamoya disease, stand out as all-around-bad-times. The moment when he saw that my carotid artery (on what had been my “good side”) had shrunk over the past year, is one I have unfortunately replayed in my head too many times and haunts me when I’m having anxiety attacks. BOO, PTSD.

The next day my parents and Matt joined me for an appointment with the Neurosurgeon to discuss what it all meant. It was an outpatient procedure, so a few hours after the angiogram I went home. Then I returned the next day for what felt like an oddly official meeting, since all my other similar experiences prior were bedside in the ICU or Neuro unit at the hospital. He confirmed the diagnosis of Moyamoya disease, showing us the comparison of my right carotid in 2016 vs. what it looked like the day before. It was basically starting to shrink closed. We scheduled the same surgery I’d had last year (EDAS) on the left side of my brain, on my right, to bypass the carotid, and ensure my brain was getting sufficient blood flow. I asked if I would have more of these terrifying “episodes” in the meantime and was told they’d probably keep happening until the surgery (even then, the surgery takes 6 months to really “take”). Only if I found they were getting worse, or if anything out of the “ordinary” from what I’d experienced thus far happened, or happened for lengthy amounts of time, should I go to the ER.

My doctors still believe a chiropractic neck adjustment caused the original dissection, but now we now know why my artery was weakened and why I was more susceptible to that injury (the disease just wasn’t at the point where it was visible the first time).

I wouldn’t say I was at peace with the diagnosis and upcoming surgery, it just confirmed some of my worst fears and was finite, where I knew these episodes were only going to get worse, and I’d probably start having strokes again if I didn’t have the surgery. I just had no choice and so there was a peace-like feeling in that (if that makes sense). We had lunch with my Mom at a nearby restaurant while my Dad headed back to work. While there was comfort in knowing what to expect, it also came with dread. Not quite sure if it was worse finding out I needed brain surgery the first or the second time. I knew how hard it was on me and that my whole family would have to suffer through it with me, again. My child would be one parent-down for awhile. My heart ached.

On the way home, Matt and I passed our old stomping grounds of Rockaway Beach. I declared an opportunity for a diversion, let’s stop and get our feet in the sand and just enjoy one of the things that makes us happiest. Matt agreed, we found parking, and set out toward the beach, passing an ice cream truck, we indulged in another happy treat. We wandered just about down to the water. I hadn’t yet had a chance to feel the exhilarating cold that hits you when the surf meets your feet… and enter another “episode”.

My right leg started feeling the tight squeeze of numbness I’d come to recognize. It travelled up to my arm and my chest, and knowing my ability to form a cohesive sentence was waning, I told Matt we had to go and I was not okay. I focused on walking through the sand with a leg that felt like it was going to give out on me any moment, holding Matt’s hand and was frustrated and furious that this was happening again. At the same time, I was trying to keep myself calm, knowing it was going to get worse as the time ticked by. I had surgery scheduled for a week and a half from that day, and this Moyamoya jerk couldn’t just leave me be until then?

I got off the beach, I waited just off the boardwalk for Matt to get the car and pick me up, feeling the tangible distancing my mind would do that came with these situations, and just kept willing myself to stay “with it” and “stay alive” no matter what. We got home, we relieved the babysitter, and I tried to sleep it off.  When the migraine cycle hit, I started taking shower after shower, as sometimes they give me some relief.  Then came the vomiting. This hadn’t happened before. That is, it has happened with migraines through the years, but not as part of these TIA-migraine like episodes yet. Food poisoning? Stroke? Heart attack? What was going on?

I couldn’t stop vomiting. I texted my Neurologist (we’d texted quite a few times since the first ER visit when I’d have symptoms, etc). I knew I needed to go back to the ER, and she confirmed it that time. I texted a family friend who rushed over to watch over our son who was sleeping by then. Matt and my parents coordinated it so that they’d immediately start heading our way to relieve said family friend, and be there for him since it was all but obvious I’d be spendng the night in the ER once again. Matt wondered if they’d “keep me” until surgery, but I poo-pooed the thought and didn’t want to pack a bag.

I vomited and dry heaved out the car window and in bags the whole way to the hospital. This no longer felt like any migraine I’d ever had, and each time I vomited, I felt myself getting weaker and more out of it. I started to will myself just to make it to the hospital, which scared the hell out of me, that I actually started to wonder if I would.

I don’t recall the triage process.  The next thing I remember was having a bed and the machines all beeping furiously. I’d been taken off my high blood pressure medicine so that my brain had more profusion which it needed. I begged the nurses to turn off the monitors because  in the past just hearing the beeping tended to make me more anxious. I was tachichardic. My pulse was over 150 bpm and I was told I was in afibrillation. They couldn’t give me the typical medications to try to manage it, because those can lower blood pressure, and lowering my blood pressure was likely the trigger for the TIAs. I’d never had AFIB before and couldn’t even begin to process that aspect of it.

I was given anti-nausea medicine that helped, as well as something for my migraine. Once I started vomiting, I was able to doze. Matt was beside me on an uncomfortable chair, trying to find a position to rest and I found myself devastated that he had been dealt this hand along with me, as I have felt so many times before. I felt like Sarah in the movie Labyrinth, “It’s not fair.”

The next day my Neurologist suggested I stay for the duration until my surgery. I was still in AFIB, which was being monitored. They were trying different ways to get me out of AFIB without bringing down my blood pressure. It was possible that they were going to put me on anti-coagulant and try a procedure called cardioversion (basically they use electric current to reset the heart’s rhythm back to its regular rhythm), which would push my brain surgery back a month. I told the Cardiologist I didn’t think I’d last that long, that the TIAs were happening more frequently and getting worse, plus I just didn’t want my heart zapped. My Neurologist thought the AFIB was a result of dehydration from the vomiting and so we all made a combined decision to give the AFIB a few days to sort itself out (hopefully).

On the third day, my heart found a normal rhythm again. It was being closely monitored and I remained in the hospital for the next week and a half, of which I literally barely remember most of that time. Visitors came and went (which I am so grateful for). Matt’s mother came to stay at our house to help with the little guy (which I am beyond grateful for). My parents juggled visiting and helping with him (have I mentioned I’m incredibly grateful?)  So much of it is a mystery to me because they all just jumped in and helped and I was just…so out of it.

And then it was May 31st, surgery day.

I had recovered amazingly from all that had happened in March of 2016. I was doing so well that I was back at work full time by September, fully enjoying (almost) everything as I did before. I still had some reminders, a few sensory issues I was still working through, and couldn’t travel by plane to anywhere high altitude. But, all the best parts were back. I was able to be a fully “normal”ish mom (if there is such a thing) and a fully participating partner to Matt in all things family, with the painful exception of not being able to visit his extended family in Colorado with him. Most days I was able to put all that had happened out of my mind and just enjoy life. There was very little I didn’t remember about the whole experience, it was all still there, I just didn’t dwell on it. I was moving forward and doing the best I could each day, just like we all do, having undergone difficult medical circumstances or not.

I was also starting to try to formulate a plan to volunteer a couple of days a month at either a rehab or hospital. I had the beginnings of an idea to make myself available to answer questions to stroke patients and their families and hopefully provide some hope and help if I shared some of the things that helped me. When I thought about my experience I wished something like that had been available to me when I was in the hospital. Whether it be how I kept myself sane in the hospital, some tips on dealing with insurance issues, some of the things I learned in therapy and just plain learned along the way. The idea was in it’s infancy, I was going to start reaching out to facilities in my immediate area to see if it was even possible. Anyway…I will still be revisiting this in the future.

And then, I had an “episode”. I was at work when I started to get tingly on my right side. My stomach was all butterflies, so I headed to the bathroom. I immediately wanted to be alone to try to gauge if it was something stroke-related or maybe/hopefully something else. When I opened the door and headed to the stalls I forgot to turn the light on. I found myself in pitch black and completely disoriented. I don’t know how long it took me to get out of the bathroom, but it felt like forever. And I realized that my right side was getting more numb, I was getting more confused, while suddenly my inside voice started screaming “you have to get to the hospital, something is wrong”.

So again, I did what I would not recommend to anyone. In times like these you are supposed to let someone know, and call 911; anything, but try to get to a hospital yourself. I can’t explain or defend that decision, but I left my office and hailed a cab on the street. I was able to tell the driver where I was going, able to shoot an email off to my boss that I didn’t feel well and had to abruptly leave. Next, I tried to text Matt about what was going on and that I needed him to meet me at the hospital and I suddenly couldn’t figure out how to text or email. Everything started to become incredibly confusing and difficult. I managed to send him what were probably horrifyingly scary messages like “help”, “hospital” “please come”, but I literally couldn’t figure out how to say more and I wasn’t sure my messages were going through. It was terrifying suddenly not knowing how to use my phone, and realizing I was probably having a stroke while stuck in bumper to bumper traffic on the FDR. I tried calling my Neurologist to let her know what was happening and to see if I should go to the ER, to the Neuro unit, or to her office (which is in the hospital) and I couldn’t say my own name. Her admin staff was amazing, they calmly tried to see if I could give them letters of my name or the first few numbers of my phone number, or anything to help her identify me. Eventually I managed to utter “ER”, which sounded like “A Air”. I just kept repeating “A Air” until she said something like, “ok, sounds like you’re on the way to the ER, if not please call 911. They’ll identify you there and let the doctor know.”

Then, I realized I didn’t have my purse. I somehow had left it at my office, but remembered to bring my back pack. My purse had my wallet in it. I’d have no way to pay the driver, I didn’t have my ID or my insurance card on me either. At this point it was probably 40 minutes or so from when it first started. I tried to explain to the driver that I wouldn’t be able to pay him today (and see if he’d be ok with an IOU), but I was speaking gibberish. I knew I had paper in my back pack, so I tried to write a note. It was a mess of scribbles and nonsense.

My taxi driver, Mohammed is a hero. At the point I showed him this note we were about 10 blocks from the hospital. He asked if I needed an ambulance, I told him we were so close and it would only take longer. My ability to speak started to come back in fits and starts. He tried to call ahead to the ER, I couldn’t give him my name or any useful information so he focused on just getting me there. When we arrived, he walked me in and explained to the triage nurses what I told him was happening and that I was having trouble talking. I asked him in broken speech to write his name and address on a piece of paper so that I could make good on paying him. I also apologized and told him this had happened before and I didn’t expect it to get so bad, and that I was sorry to put him in that situation. I must have also given him my phone number because a few days later he called to check in on me and continued to text his healing thoughts and prayers from time to time. He could have called the cops for my non-payment, I was a stranger who should have called 911, but instead put a stranger in a pretty stressful situation. Instead he has been a cheerleader and supporter, and I will forever be grateful for him. I’ve also made good on the and fare and of course an extra nice tip, and he will forever be on our holiday card list.

I was back at Cornell, a place of immense hope and rescue for me, but also a place of dread. The last time something similar happened, it was almost a month before I got out. All I knew was that something was terribly wrong, and whatever it was, it couldn’t be good.

The short story of what happened next was stroke protocol I’ve detailed before:  brain scans, vitals checks, many questions. My speech came back fully shortly after I arrived, my right side returned to normal. They wanted to give me TPA, which is a clot buster and typically a life-saver in strokes. I realized I never received this in the past and explained that I had a bad feeling I shouldn’t get it since I have a clot in my left carotid, God forbid it was breaking up, and that was causing this…I generally feared a clot buster could potentially cause cause that clot, which had been stable, to become unstable. I called my Neurologist on her cell phone. Her admin had told her about the call she received and she answered on the first ring. She confirmed my hunch that I should not get TPA. A few minutes later she was in the room explaining my history and why she felt the risks did not outweigh the potential benefits. I probably don’t say it enough, but my Neuro is another of many heroes I’ve been so lucky to have in my life (if a doctor or nurse reads this, please note having access to a cell phone number for a doctor has many benefits, this is just one of many I will detail during this journey. Though I can only imagine the downsides as well that she takes on at a great expense to her time.) Again, I’ve been blessed with a lot of HEROES in this journey, and she’s one of the main characters.

There was no evidence of stroke on my scans, I’d had a TIA.  Some “goodish” news, but like the last time, it’s a long story and got very complicated.

I’ll talk more about my eventual diagnosis of moyamoya and all that happened since soon.

The reality of going back to work is coming closer and I’m trying to prepare. Some things that will help…I should start setting an alarm to get used to waking up earlier, I should recharge my laptop and do some file maintenance before I go back. I should schedule other meetings to get a sense of what my assignment will be, I should schedule time with HR to figure out a transition schedule.

But, I’ve had a sinus headache for days, I’m trying to learn how to live without decongestants when this happens, but headaches post-stroke/brain surgery are such a different ballgame. So, I’ve been procrastinating. Just one more day until it rains and I do think that will help with this darn headache, or maybe it won’t.

And, of course there is fear, which is probably behind the procrastination a bit more than the headache. What if I just can’t do it? What if I get tired and slurry, while still facing a commute home? What if I get a migraine? What if I find that I can’t find my words…more than less?  What if I have another stroke? What if I forget the alphabet again?

That last one happened when I was in the hospital. That fear plagues me more day to day and is the one I talk about the least to people. There was one day when my son came to visit and I realized I couldn’t remember a single baby song, including the ABCs. After he left I remember googling the ABCs. How could I forget the alphabet? OMG, I couldn’t remember a single letter after ABC. This was less than three months ago. I had to google the freaking alphabet and practice it again, like I did in preschool (except in preschool there was no internet and I was around other preschoolers learning it too).  I remember my browser was open to that search when my dad came to visit and I quickly closed it out of embarrassment, I didn’t want anyone, especially my parents to know I was struggling with the freaking ABCs.

When I came home the songs came back to me. I could sing “The Wheels On The Bus” and “Twinkle Twinkle Little Star” and a few others, albeit off tune to my son. I wanted to brag, but then I realized I had mostly kept that part a secret….and, well, it’s kind of one of those things you should be able to take for granted….singing kid’s songs to your kid.

I still have a very hard time learning new songs. Oliver has a love for theme songs for shows. He’s started kind of humming, or em em emimng to them and I try to sing along to encourage it. I’m still stuck on the same few lines of each song that I’ve known for the past two months. It’s frustrating that every time the Floogles, Octonots, or Mickey Mouse Club House comes on I am reminded that my brain is stuck. But, then I try to remember if before the stroke this might have been an issue, but I have always hated theme songs until I had a kid who seems to love them, so I have no idea  I could probably google them and study them too, but I should be readying for work, and I have a headache.

At my last appointment with the plastic surgeon who co-operated on me the last go, I had half the stitches removed. Every other stitch was taken out and I got to wait just under two weeks to get the remainder out. I am so grateful for a conservative approach, for amazing surgeons, and for the option to do something different this time, since it all went so horribly bad the last time.

So far, so good.

The difference in the daily pain, tightness, discomfort and pinching has been tangible. I don’t know if I can properly do justice trying to describe it, but I’m going to try. Within an hour of getting all the stitches out, I felt nothing at the wound/surgery site. I realized that since March I had kind of learned to live with constant discomfort and the feeling that “something terrible” (or something awesome depending on my pov) had happened to the side of my head. I felt like I had been going about my day with some sort of bear trap long ago stepped in on the side of my head and had just imagined it might always feel that way. I think I thought it was as good as it was going to get. It was like an early Christmas present when that bear trap was removed, I feel like I truly have a whole new life ahead.

There are still random pains to that side of my head and my neck doesn’t quite ever feel “right”. I’m not totally out of the proverbial woods that it will heal and so on. I still have a long road ahead, but it feels a lot more…just better than I even realized it might be. So there’s that, and it’s pretty great.